TIME vaccines

Childhood Vaccines Are Safe, Says Pediatrics Group

The latest in-depth review of immunizations shows that they aren’t linked to higher risk of autism or cancer

It’s been three years since the Institute of Medicine (IOM) came out with its comprehensive look at vaccine safety. That’s enough time to generate dozens more studies investigating side effects and risk of conditions such as autism and cancer that keep some parents from vaccinating their children against potentially lethal diseases like mumps, measles and pertussis.

Since 2011, when the IOM issued its report, 67 new studies that included proper follow up periods and control groups have emerged. So the Agency for Healthcare Research and Quality requested an updated review of the data on vaccine safety, this time including data on previously unstudied immunizations against pneumococcus, rotavirus, Hib and inactivated polio virus vaccines in addition to the well-studied ones.

MORE: How Safe Are Vaccines?

Overall, the researchers, led by Margaret Maglione at the RAND Corporation, report in the journal Pediatrics that most of the childhood immunizations are safe, with only a few associated with rare adverse effects. The group found that the MMR vaccine, which some parents believe raise the risk of autism, does not increase the risk of the developmental disorder. They did find moderate evidence that rotavirus vaccination can cause twisting of the bowels in a small number of children, but the condition can be treated.

“We need to keep doing this,” says Dr. Carol Baker, executive director of the center for vaccine awareness and research at Texas Children’s Hospital, of the study updates. “We can’t just sit still and rest on prior information.”

MORE: 4 Diseases Making a Comeback Thanks to Anti-Vaxxers

Increasingly, she says, pediatricians are spending more time discussing vaccines and vaccine safety with confused or hesitant parents. That’s a different scenario from the days of the polio epidemic, when parents were lining their children up to get them vaccinated against the paralyzing disease. “The major reason the safety of vaccines has become more of an issue recently is that many of the diseases they prevent have pretty much disappeared,” says Baker, who also served as chair of the Centers for Disease Control’s Advisory Committee on Immunization Practices, which makes recommendations about which vaccines children should get, and when. “So this is a very needed report.”

It’s especially helpful as more parents are either skeptical about vaccines, and need reassurance that getting their children is the safe, and responsible thing to do, or are adamantly convinced that vaccines do more harm than good. Many pediatricians have alerted their patients that they won’t see children whose parents won’t get them vaccinated since they could pose a risk of passing on disease to their other patients, including infants under six months old who can’t get vaccinated because their immune systems are still too undeveloped to respond properly to the shots, and children whose immune systems are compromised because of cancer or other conditions. The American Academy of Pediatrics doesn’t advise that its members refuse patients, but some pediatricians believe it’s the only way to protect the children they see. “Pediatricians have to have a conversation about risks and benefits of vaccines,” says Baker. “So we need to keep looking at the studies and the data. Vaccines are good, and disease is bad, and the risk-benefit ratio is favorable for all vaccines. This new study gives reassurance that that’s true.”

TIME Infectious Disease

Study: Measles, Mumps and Rubella Vaccines Not Associated With Autism

Although vaccines have eliminated many communicable diseases, some parents have chosen not to vaccinate their children in recent years

A new study on childhood vaccines determined that immunizations do not lead to autism — a finding that researchers hope will dissipate fears propagated by antivaccine campaigners such as Hollywood stars Jenny McCarthy and Jim Carrey.

Researchers in the study referenced 67 scientific papers, which were chosen for their control and comparison groups and relevance, to expose the low-risk factors of vaccinations.

“Without this work there would be a lack of transparency around this issue, so by doing this important research in a thorough and systematic way, we acknowledge that there are rare but actual side effects,” said co-author Margaret Maglione, a policy analyst at RAND Corp.

The study published in the peer-reviewed journal Pediatrics concluded there is no link between vaccines and leukemia or food allergies. Vaccines for measles, mumps and rubella (MMR) were found to occasionally have the severe side effects of fever or seizures; although, crucially, the report concludes that the “MMR vaccine is not associated with autism.”

Although vaccines have eliminated many communicable diseases, some parents have chosen not to vaccinate their children in recent years. A 2010 study showed that California had the highest cases of whooping cough since 1947. Researchers did not directly study the effects of vaccine opt-out, but found that a cluster of unvaccinated children played a role in the epidemic.

Researchers in the Pediatrics study hoped parents would be convinced by the effectiveness of vaccines, which they wrote represent “one of the greatest public-health achievements of the 20th century for their role in eradicating smallpox and controlling polio, measles, rubella and other infectious diseases in the United States.”

Study co-author Courtney Gidengil, a pediatrician at Boston Children’s Hospital and professor at Harvard Medical School, told AFP that while some parents may still be reluctant, the research should “increase some trust in the vaccine process and the trust between parents and their health care provider.”

 

MONEY health

Raising an Autistic Child: Coping With the Costs

A new study pegs the lifetime cost of caring for a child with autism at $1.4 million. For parents, there are no easy solutions.

When Linda Mercier’s son Sam was around two years old, she knew something wasn’t right.

Sam was becoming withdrawn, not speaking or playing with other kids, and focused on specific tasks like lining up his toys. Eventually the mystery was solved: He was diagnosed with an Autism Spectrum Disorder, or ASD.

That was the beginning of a very long road, one that has involved significant time, effort — and money, plenty of it. Hundreds of thousands of dollars so far, Mercier estimates, on tutors, therapists and lost wages.

The good news: Same is now high-functioning, and in many respects a completely normal 13-year-old. The downside: The price tag to get to this point has been massive.

“Only a parent of a child with special needs can ever understand the struggles, and the financial commitment, of raising and recovering an autistic child,” says Mercier, a business owner from Winnipeg, Canada. “It’s an endless battle — and an expensive one.”

Indeed: A new study in the medical journal JAMA Pediatrics has pegged the total lifetime cost of supporting an individual with an ASD at an astonishing $1.4 million in the United States. If there is also intellectual disability, the total rises even more, to $2.4 million.

RELATED: Paying for My Special-Needs Child

Such costs typically include an ongoing mix of special education programs, medical care and lost wages. After all, many parents of autistic children reduce their work hours, or even quit their jobs altogether, to help their child full-time.

The study is the most recent to tabulate just how crushing these figures really are.

“I can believe it,” says Mercier, when told of the million-dollar-plus price tag. “Easy.”

Even the study’s lead author admits to being taken aback by the final number.

“I was really surprised,” said Dr. David Mandell, director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania. “The old estimates were from 8 or 9 years ago, and at first I was skeptical they needed updating.”

New studies are providing more current cost estimates. “What we found was shocking,” Mandell said. “This is a huge hit on families.”

Journalist Ron Suskind knows about that financial hit first-hand. His son Owen, now 23, was diagnosed as being on the autism spectrum about 20 years ago, a journey Suskind has recounted in the book “Life, Animated.”

Owen has made remarkable strides, thanks to what Suskind calls “affinity therapy,” or tailoring treatment depending on the child’s particular way of understanding the world.

In Owen’s case, his preferred frame of reference is Disney movies. Using that template, Suskind and his wife got to work unlocking Owen’s full potential. But it did not come cheaply.

The organization Autism Speaks estimates that it takes around $60,000 a year to support someone with an ASD, Suskind says, adding that treatment for Owen cost about $90,000 a year.

“When we first got the diagnosis, the doctor asked me what I did for a living, and I said ‘newspaper reporter.’ He said, ‘I’m so sorry to hear that. You know, private equity is a nice way to go.’”

MOVING FOR SERVICES

The costs are so prohibitive that many affected families actually pick up and move to states that offer a superior array of therapeutic services. Suskind calls it a “Grapes of Wrath”-style migration, of families ultimately headed for locales like New York or Massachusetts. (To choose the right place for your family, check out Autism Speaks’ state-by-state resource guide.)

There is also a measure before Congress that aims to mitigate the financial burden for families: So-called ABLE accounts would be patterned after 529 college-savings plans, but specifically geared toward those with disabilities. The tax-advantaged savings could be put toward expenses like education, housing, therapy and rehab.

RELATED: Paying for My Special-Needs Child

One piece of advice from Mandell: Don’t automatically think that you have to drop out of the workforce in order to manage your child’s case full-time.

It’s the natural human instinct to want to do so, of course. No one knows your child and his or her needs like you do, and navigating multiple layers of city, state and federal services can indeed be a full-time job.

But when one parent drops out of the workforce, just as out-of-pocket expenses start to mount up, “it can become very financially difficult,” Mandell says.

He urges families to take a long-term view of caregiving. “In some cases it might be better for the mother to stay in the workforce, and then hire additional support to provide case-management services,” he says.

For Linda Mercier, the towering costs hit her family budget every single day. It meant cutting back wherever possible, taking second jobs and foregoing trips to visit family. All well worth it, of course, since Sam has been such an inspiring success story.

But there’s no question that raising a child with an ASD is a sobering financial reality.

“I would tell other parents of special-needs children that there is hope,” says Mercier. “It can get a lot better, and it does. But it takes a whole lot of money to get there.”

RELATED: Paying for My Special-Needs Child

MONEY Financial Planning

Paying For My Special-Needs Child

The cost of son Finn's care has forced author Jeff Howe and his family to make some tough choices. ©Annabel Clark 2013

Raising a special-needs child is frustrating, chaotic, rewarding — and very, very expensive. The author shares his family's challenges caring for their severely autistic son.

Our kid is nothing like your kid.

I don’t mean that in an every-child-is-unique-as-a-snowflake way. I mean that my wife, Alysia, and I are pretty sure that Finn hails from some distant, unknown planet.

His favorite foods include dirt and discarded water balloons. He spends hours a day in a headstand. He giggles maniacally at any expression of pain or distress. Recently I caught him shattering our water glasses on the patio. While I went for the broom, he dumped a quart of milk onto our kitchen floor. I tried to scold him, but he was already engrossed in one of his favorite hobbies: smelling his right foot.

What’s wrong with this child? There are a lot of ways to answer that question.

We have some acronyms, for instance: He’s been diagnosed with CVI (cortical vision impairment), ASD (autism spectrum disorder), and DCD (developmental cognitive disability). My favorite, PDD-NOS (pervasive developmental delay not otherwise specified), is the most accurate. It’s doctor-speak for “We have no earthly idea what’s wrong with your child.”

I often find myself grasping for otherworldly metaphors to explain our experience. Imagine E.T. came to your house but never figured out how to phone home. No spaceship. No tearful departure. Just you, the other humans in the house, and E.T. He can’t really communicate, so domestic dramas take place through wild gestures and improvised sign language.

“We are not of his world,” Alysia and I tell ourselves. “And he is not of ours.” The best we can do is help our alien child negotiate the baffling planet on which he’s found himself.

A quarter of U.S. households have a member with special needs. More than 8% of kids under 15 have a disability, and half of those are deemed severe.

What we share in common with the parents of all those special-needs children is that our kids have almost nothing in common: Within the “autism spectrum” alone there is far more diversity than there is within the rest of the human population. As one clinical psychologist told me, “Saying you study autism is like saying you study the world of non-elephant animals.”

Special-needs parents do share one thing: the eviscerating cost of our children. It’s one of the awful ironies of this unchosen life. Not only do we divorce more frequently and suffer from more mental health problems, but we pay dearly for the privilege.

According to Autism Speaks, the cost of caring for an autistic person over his or her lifetime is $2.3 million. Families shoulder much of that burden, and the strain on state and federal governments threatens to tear away whatever safety net remains.

RELATED: Raising an Autistic Child: Coping With the Costs

Some of the expenses can be tabulated, like the $1,800 a year we spend on diapers for our 5-year-old or the $24,000 a year we pay for a caregiver we wouldn’t otherwise employ.

Others are harder to calculate. Finn mutilates toys, shreds books into confetti, shatters picture frames, and tears at our emotions in ways we can’t fathom. Is my budding rheumatism at age 42 a product of this long-term stress? Then there are the inevitable tensions between Alysia (who is also 42) and me, as we claw at each other for some small pocket of oxygen — a night out with friends, a few days of escape, a quiet place to work in an otherwise suffocating environment.

Despite it all — the broken glass, the tantrums, the bite marks, the feces Pollocked across his bedroom wall — I quite love my sweet, strange boy. There are mornings when I get up early and steal into Finn’s room. I drift back off to sleep, but wake to find him smiling mysteriously and running his hand over my cheek, entranced by the sensation of stubble against his inner arm. Then he giggles and tries to do a headstand on my stomach. Finn is my son, and I love him. It has come as unwelcome news, then, that it’s not clear how we’ll afford to give him everything he so desperately needs.

Annabel was born two years before Finn, so I knew all about wellness visits. Mother takes baby to the doctor. Doctor puts baby on a scale. Baby laughs. Mother smiles. Everyone is very, very well.

Tragedy, on the other hand, is what happens to other people. The fire. The cancer. The bus. And then, in the silence between the first and second ring on my office phone, it was my turn. It sounds melodramatic to say that I knew, even before I’d picked up the receiver, that my old life had already “broken, quickly, like a stick,” as author Lorrie Moore once wrote. But it’s true.

“What’s wrong?”

“We have an appointment with a neurologist,” Alysia said, her voice flat. “Dr. Dalton thinks Finn might have developmental delays.”

“Delays,” I said. I could hear my colleagues laughing in the adjoining room. It was bright and sunny in the magazine office where I worked.

“What does that mean?” I asked. Alysia didn’t know. “He should be smiling at Annabel,” she said. There were other concerns. His eyes were deeply crossed, and his legs hung funny. He lacked muscle tone. The issues were “global.” Later that afternoon we went to our local coffee shop to talk. Alysia cried. I didn’t.

“We could be dealing with this for months,” she said between sobs. “Or years.” Years? Was that all? Fine. The train is delayed. The ball game is delayed. Our baby is delayed, but will be here, smiling, well, in a year or two.

As it happens, Finn didn’t smile his first year; he barely gained weight until he turned 2; he didn’t walk until he was 3.

Once unresponsive, he began erupting into inconsolable spasms of rage or chewed his cheek into a bloody mass. Alysia and I were left brittle and exhausted. We saw a psychologist, who diagnosed us with another acronym, PTSD — post-traumatic stress disorder. Contrary to the TV-movie version of special-needs parenting, there’s no heroism in our daily lives, only jury-rigged schemes, constantly changing, to help get us through each day.

Finn immediately exacted a serious toll on our finances. Alysia gave up her job as a freelance radio producer. Cost: $25,000 a year.

Despite this, we needed a full-time caregiver to free us up for our new job as advocates — manning the phones and scheduling the legions of occupational, physical, and speech therapists that began trooping in and out to try to help Finn.

For reasons no doctor fully understands, autistic kids often suffer from seemingly unrelated medical conditions. By the time Finn was 3, he had been put under five times, for everything from an exploratory endoscopy to surgery to correct his crossed eyes.

Our grief in those first few years rendered us zombies, sleepwalking through our social and professional obligations. Alysia and I had never been organized; now the sea of insurance forms, medical reports, and test results threatened to swamp every surface of the house. Relegated to professional parent, her creative dreams deferred, Alysia became the primary caregiver, and we became dependent on my career. That put enormous strains on our relationship.

Our version of financial planning at the time was to cross our fingers and hope the checks coming in totaled more than the checks going out. And until recently they had. Alysia now writes essays and memoirs; I teach, and write freelance about business and technology.

In 2006, I coined the term “crowdsourcing” in a feature for Wired magazine. A fat book advance was followed by well-paid speaking engagements and then, in 2009, a Harvard fellowship. I joked that God gave us a lot of money, and a son to spend it on.

In short, our life after the diagnosis was characterized by financial fortune and unending upheaval. We moved three times, enrolled our children in three different daycares, and conferred with nearly a dozen neurologists, pediatricians, dietitians, gastroenterologists, geneticists, and ear, nose, and throat doctors. In the pursuit of speaking gigs or the next great story, I traveled to Bangkok, Milan, Moscow, Kazakhstan, Yangon (formerly Rangoon), and Vienna.

More than two years after Finn’s diagnosis, we had had enough.

In 2010 I accepted a tenure-track post teaching journalism at Northeastern University, and we bought a three-bedroom house in Cambridge, Mass. For the first time in our marriage, we had employer health insurance and a retirement package. Alysia returned to writing and sold a memoir about growing up with her poet father, Steve Abbott.

Our neighbors turned out to be lovely people with a daughter the same age as Annabel; they quickly become best friends. It was almost like a real life. Finn received extensive therapy — speech, occupational, and physical — at a special program in the public preschool, but we failed to enroll him in after-school services. We were simply exhausted after spending years trying to wheedle benefits out of various state and city agencies.

Now we’re plagued by perpetual guilt that we could — should — do more for our son. But like a lot of families with a disabled child — even families like ours, with some means — we’re faced with a Sophie’s Choice: If we empty the bank for therapy for our disabled child, it necessarily means not spending as much on his “neurotypical” older sister. It’s an awful thing to contemplate: No parents should be forced to compute the ROI on their kid.

Sometimes Finn will throw a tantrum and, for no reason at all, pull Annabel’s hair. “Stop, Finn. No!” I’ll scream, reacting with primeval rage at the sight of this attack on an innocent. Annabel simply won’t have it.

“Stop, Daddy,” she will scream through her tears. “Don’t yell at him.” If it were up to her, our every last dollar would go to her brother, the subject of her every poem, her every drawing, the first thought she has on waking and tumbling into his room in search of a hug that is rarely reciprocated. But, of course, it’s not up to her.

* * *

John Nadworny is familiar with scary math. His youngest son, James, recently turned 22, the point at which school districts relinquish responsibility for a special-needs child.

James has Down syndrome; Nadworny’s family has spent two decades preparing for this day. They bought an apartment building near their home, west of Boston. James and two other disabled adults will live with their caregivers. Rents will generate $65,000 a year for the family. That’s not enough: James requires round-the-clock care, daily “programming” to keep him engaged and intellectually fulfilled, and, not least, transportation to and from those various activities.

Nadworny’s experience is helpful, and not just because of James. Nadworny runs a financial-planning practice and is the author, along with a business partner, Cynthia Haddad, of The Special Needs Planning Guide. He says our acute distress makes us like a lot of other families with a disabled child.

RELATED: Raising an Autistic Child: Coping With the Costs

The number of children diagnosed with autism has skyrocketed in recent years, from fewer than 1 in 1,000 in the 1980s to 1 in 50 kids today.

Well before Finn hits 22, a wave of disabled children will “age out,” requiring massive amounts of state assistance. So just as baby boomers start putting unprecedented stress on government benefits, a slightly smaller but still significant population of disabled people will be in need of government help too.

“People assume the state will be there to help with their child,” Nadworny says, “but that’s a really risky bet.”

After an initial meet and greet, Nadworny asks us to submit our tax returns, bank statements, and the data on our mortgage and car loans. We provide the necessary paperwork, then file into his office a few weeks later. Nadworny looks nervous. “Frankly, the numbers we have could easily overwhelm you,” he says. Alysia and I look at each other warily. There is, we learn, good news and bad news. Looking at our balance sheet, we see that our assets come to a healthy $930,000, which means while we’re not one-percenters, we’re firmly ensconced in the upper middle class.

Most of our wealth is tied up in our house; the rest is socked away in an ill-considered mix of stocks, fixed-income securities, and other investments. We have no rainy-day fund of liquid assets. Because my book and speech income are so variable, over the past five years, we’ve made anywhere from $80,000 to $270,000, averaging $160,000 or so. Our expenses are high as well, hitting $165,000 in 2011 and $185,000 last year. In the years we run a deficit we tap savings to make up the shortfall.

We hired a bookkeeper last fall to detail our spending and make some sense of the deficit. She found that $30,000 a year went to mortgage payments, $4,400 to utilities, and $9,200 to taxes in 2011. Another $50,000 consisted of reasonable, discretionary expenditures, much of it one-time costs to furnish our new home. The remaining $24,000 is what Alysia and I call a “stupidity tax.” We paid nearly $1,000 in credit card fees and interest payments and an additional $2,300 to sustain my Nicorette habit.

As journalists, we might justify the $2,000 we spent on books and movies as necessary brain food, but as special-needs parents, those expenditures start looking a little more frivolous. So do the $5,300 we spent on clothes in 2011 and the whopping $6,000 we handed over to various restaurants and cafés. Finally, there’s the $6,000 in cash withdrawals.

How much of our money goes to Finn in one form or another? Certainly the $24,000 we spend on our babysitter cum favorite aunt, Gee. If not for Finn’s disability, we could easily manage two children without additional help. Then there’s the $9,000 in out-of-pocket health care costs, $5,400 of which goes toward deductibles for procedures for Finn.

The first step in getting our finances on track, Nadworny tells us, is to control our spending. Then we need to put together a proper savings plan that isn’t locked away in home equity. “You have to live in your house,” Nadworny notes. “So it’s not generally considered a measure of wealth.” We know that at some point in the future we’ll be able to sell it, probably for a decent profit, but it doesn’t help things much now.

And while our $380,000 in savings is decent for our age and income, only 15% is invested in tax-deferred vehicles. Not great, maybe, and something we can surely fix, but it’s where we are at the moment. We have an additional $16,000 in college savings, and in the course of working on this story, we discover $16,000 in a New York State pension fund for Alysia. But all that is chicken scratch against what we’ll need to sustain Finn when he “ages out” of the system.

In the meantime, I’m worried we’re inadequately prepared for any kind of disaster. While Northeastern University provides our family ample health insurance, its $160,000 life insurance policy is a drop in the bucket of what Alysia would need were I to die prematurely. We don’t have any life insurance for Alysia. We haven’t written a will or designated a guardian for the kids. We are, Nadworny implies, an urgent case.

RELATED: Raising an Autistic Child: Coping With the Costs

It isn’t as if our long-term goals are lavish: We’d like to retire at 70. We want Annabel to go to any college she chooses. And we want Finn, of course, to have a happy, healthy, richly engaging life.

The bill for achieving those goals? We need to save $800 a month for Annabel’s college alone. We should be contributing the allowable maximum of $17,500 a year to my employer-provided retirement account.

And Finn? “The fact is, you’ll have to rely on government benefits,” says Nadworny, who has already warned us that gaining access to those benefits is incredibly time-consuming. Disabled adults are eligible for Supplemental Security Income as long as their total assets don’t exceed $2,000. Even the measly $4,500 we put into a 529 — a tax-deferred investment vehicle for college savings — must be transferred out of Finn’s name.

All this creates a host of planning issues for special-needs families, since they cannot designate their disabled child as a beneficiary in any will or life insurance policy without jeopardizing his or her eligibility. There are, instead, special-needs trusts that specifically address this concern, but that’s still uncharted territory for us.

The bottom line? Unless we receive some windfall, our combined savings and the SSI benefit won’t come close to covering the $100,000 a year, in 2012 dollars, it could well take to care for Finn, who will need 24-hour attention, continuous learning, and a way to get to and from wherever he needs to go.

We’ve reached the point where our house, basically, is Finn’s trust fund, meaning we’ll be able to apply the proceeds from the sale of that to his care. That, of course, assumes that we won’t still need a big house to take care of him as an adult and that we can make enough money by downscaling to make a dent.

“The problem you have, really, is Gee,” Nadworny says. He looks stricken as he says it.

“Think of it this way,” Nadworny says. “You’re paying your nanny $2,000 a month. “That’s $2,000 you are not saving. That’s equivalent to a” — Nadworny’s fingers fly across his calculator — “$365,000 mortgage. On top of your $417,000 mortgage.”

The metaphor isn’t perfectly fair, of course. We pay neither property insurance nor upkeep on our beloved sitter. Nadworny’s point hits home nonetheless, and with a brutal calculus that’s impossible to avoid.

To the extent we have anything approaching a normal life, Gee makes it happen, a life in which both partners pursue their dreams, attend social events with our friends, and our daughter receives the sort of two-on-one attention that would be her lot if we hadn’t had Finn. But a normal life, by Nadworny’s accounting, might be a luxury we can’t afford.

* * *

Months pass after our first set of meetings with Nadworny. We make some changes right away. We link all our accounts to the online budgeting tool Mint.com, which proves a harsh taskmaster.

Suddenly every expenditure is flashed across my screen when I open my computer in the morning. When we exceed our monthly budget, Mint tells us, in garish red reminders. It’s worked: I’ve quit chewing Nicorette. I haven’t bought a fancy dress shirt in some time. I make a mean smoked bluefish paté that I bring into the office to spread on a bagel.

Of course, these are nips and tucks. Caring for a special-needs child requires a mix of government benefits and personal expenditures. We’ve overcome our congenital phobia toward paperwork and managed to get Finn signed up for a “personal care assistant,” to be paid for through CommonHealth, part of the comprehensive health care legislation passed by then-governor Mitt Romney.

Are we eligible for other benefits? Good question: Part of the struggle families like ours face is the detective work it takes to even discover the benefits hidden, like Easter eggs, in the nooks and crannies of state and federal policies.

We know the CommonHealth money will provide us with $9,555 to retain Gee part-time to help Finn eat, bathe, dress, and “toilet,” the euphemism his teachers use to mean changing a 5-year-old’s diapers. It is a testament to Gee’s heart that she has begun taking Finn, gratis, for a few hours each weekend to give us a spell from his infrequent but violent tantrums.

We’re on track to spend $144,000 this year, and thanks to a new book contract I just signed, we should be able to put at least $50,000 into savings.

Now we have to figure out where to put it. The first step, Nadworny advises, is to max out my contributions to the university’s retirement plan. It will contribute $2 for every $1 of mine, up to 10%.

We’ll roll over the New York State pension Alysia found into an IRA, and maximize her contribution — currently $5,500. Finally, we’ll reduce our tax exposure by starting a simplified employee pension, or SEP, IRA. Originally created to give small-business owners a way to set up pension plans for their employees, it also allows people like us, who make most of their money as independent contractors, to create alternative vehicles for retirement.

To remove any possible asset from Finn’s name, and because he’s unlikely to go to college, we’ll shift the $4,800 in his 529 plan into Annabel’s account, bringing it to $16,000. And, finally, we’ve begun the process of applying for life insurance policies. I’ve recently taken out a $500,000 term life insurance policy to supplement the policy offered by Northeastern. Following Nadworny’s advice, Alysia is applying for an additional $500,000 policy for herself.

And that brings us back to Finn. One byproduct of our economies is that we’ve freed up money that allows us to increase our spending on him. Previously he received all his therapies through the school district. In the fall we entered him in a highly regarded occupational-therapy program. We’re spending $850 a month and consider it worth every cent.

The final frontier for us (and, I suspect, many other families like ours) is to create a will and trust for our children. This is not straightforward. There are specialized vehicles that provide for the care of a kid like Finn without endangering his government benefits. There is also, critically, something called a letter of intent, which spells out the terms of care for a person who can’t express those needs himself. But someone needs to serve as trustee; another person needs to serve as guardian.

How do you ask even a close family member to shoulder what we have taken on? There is, in our case, no obvious contender and no obvious solution.

So there are challenges. We’re used to those. “Don’t look for sudden progress,” a well-meaning neurologist once told us. “Autistic kids get better. But it happens very, very slowly.” Maybe it’s the new therapy, but lately it seems that Finn is experiencing what a less weary parent might call a breakthrough. One day this spring he hugged Annabel, out of the blue. Alysia and I exchanged looks of awe, then joined in. Just like any other family.

RELATED: Raising an Autistic Child: Coping With the Costs

TIME social anxiety

This Is the Brain Circuit That Makes You Shy

Using a new light-based technique, scientists trace the nerve network that lights up when mammals meet

What do you do when you want to study something as complicated as what happens deep in the brain when two strangers meet? You develop a completely new way of tracking nerve connections, and then you test it in mice.

That’s what Dr. Karl Deisseroth, a professor of psychiatry and bioengineering at Stanford University, and his colleagues did. “We know social behavior is complicated, but to be able to delve into the brain of freely behaving mammals and to see the signal in real time predicting their social interaction was very exciting,” says Deisseroth, who published his results in the journal Cell.

Brain researchers have long known that certain chemicals known as neurotransmitters soar or drop depending on what we’re doing and how we feel. Based on these observations, drug companies have developed an armada of medications aimed at mimicking these changes to treat everything from depression, hyperactivity and even social anxiety or shyness. But there’s a difference between observing hormone levels rising or falling and identifying a specific circuit — among the millions that occur in the brain — responsible for how we feel and whether we are friendly at a first meeting, say, or a little more reserved. Studying those circuits has been challenging because scientists simply couldn’t get real-time information about which nerves were firing, and where, when certain behaviors, such as a meet and greet, occurred.

(MORE: The Upside of Being an Introvert (and Why Extroverts Are Overrated))

Deisseroth solved that problem. Using optogenetics and fiber photometry, he was able to tag specific nerves in the brain with light-receptor molecules and connect them to ultra-thin fibers that were tied to a switch. Flip the switch on, and the cells were stimulated; turn it off and they quieted down.

Deisseroth and his team hooked up their show to cells that operated on the brain chemical dopamine. When they turned the system on, the cells would release dopamine, and when that happened, the mice showed more interest in investigating newcomers dropped into their cage — they sniffed, they explored and they engaged. When the dopamine activation was turned off, however, the mice made little effort to acknowledge or investigate the intruder.

(MORE: Study: Nearly 1 in 8 Shy Teens May Have Social Phobia)

While manipulating the social interactions of mice is fascinating in itself, Deisseroth sees his findings as being potentially helpful in treating mental illnesses. The fact that he was able to isolate a single circuit that affected something as complex as social behavior suggests that manipulation of deep brain circuits might be a promising way to treat, or modulate behavior in people as well. What if, for example, it became possible to dampen the social aversion that affects some children with autism? If they could interact with people more comfortably, it might be possible to modulate the other symptoms of their developmental disorder. Or what if hyperactivity could be dialed down? Or depression’s darkest moods lightened in the same way?

Deisseroth stresses that we’re far from even speculating how such therapies might be used, but the possibility that deep brain circuits might be tapped to affect behavior is promising. In the meantime, says Deisseroth, “We know these things are complex. The brain is so mysterious, and psychiatry is so mysterious, so our job for a long time will be to deepen understanding of these complex circuits. If that’s the only thing that comes out of this, that would still be great.”

TIME Autism

Pesticide Exposure During Pregnancy Strongly Linked to Autism

Prenatal exposure to commercial pest spraying can boost risk of autism by up to 60%

Autism cannot be attributed to any one risk factor—genes play a role, as does an expectant mom’s diet, some medications and exposure to environmental pollutants. While previous studies have connected autism to prenatal exposure to agricultural chemicals, it wasn’t clear whether other factors could account for the higher rates of autism among their children. A new study gets closer to the answer.

California laws require that commercial pesticide spraying be recorded. So Irva Hertz-Picciotto, professor of epidemiology at the Mind Institute at University of California, Davis, took advantage of the data showing where pesticides had been sprayed and matched it against pregnant women’s home addresses. About one-third of the mothers-to-be lived under a mile from at least one pesticide application during their pregnancy. If the pesticide was an organophosphate, a class of compounds that has largely been phased out of home bug and lawn sprays but remain in commercial applications, the women showed a 60% higher risk of having a child with an autism spectrum disorder (ASD). Living near a spraying of pyrethroids, which are commonly found in home insect sprays, just before conception or during the third trimester of pregnancy increased by up to two-fold the risk of both ASDs and developmental delays.

Insecticides are known to be toxic to nerves, and developing babies may be especially vulnerable, says Hertz-Picciotto, since their brains are just forming important brain structures and connections that can be disrupted by the chemicals. “Many pesticides operate through affecting the nervous system of lower organisms,” she says. “So they should be taken seriously, because they are by design neurotoxic. The question is at what dose.”

Still, while the study involved more than 1,000 participants, Hertz-Picciotto says it’s not definitive proof that pesticides cause autism. They adjusted for potential factors that could also contribute to higher risk of autism, such as parental age, mother’s health, and distance of the residences from freeways. But they did not have information on how many hours the pregnant women typically spent at home, or on whether they were actually at home during the sprayings. The scientists also did not have information on the mothers’ diets, which could introduce pesticide residue from foods, or their occupations, including whether their workplace exposures might have also played a role in their children’s autism risk.

The association does add to growing data that connects pesticide exposure to potential developmental problems in fetuses, however. The fact that the rates of autism were highest among women who lived closest to the pesticide applications, and lower among those who lived further away, suggests that the chemicals are worth studying further for what role, if any, they play in contributing to autism.

TIME Developmental Disorders

The Lifetime Cost of Autism Tops $2 Million per Person

In addition to medical costs, autism takes a financial toll in hidden ways as well, according to the latest tally

U.S. and U.K. scientists have completed the most comprehensive analysis of the costs associated with supporting a child with an autism-spectrum disorder (ASD) over a lifetime and found that those whose ASD is linked with intellectual disability can accrue up to $2.4 million while those without intellectual disability require about $1.4 million in medical, nonmedical and indirect costs. And that’s on top of the average $241,000 that it takes to raise a child to age 18 in the U.S.

(MORE: Using Movement to Diagnose and Treat Autism)

About 79% of that cost is due to services such as medical care, home health care, special education and after-school care — and 9% is due to wages that caregivers give up to tend to an autistic family member. The latter came as a surprise, says the paper’s senior author, David Mandell, director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania, who points out that not enough of the debate about autism’s toll includes consideration of the indirect consequences of the condition. But, he says, “I think these costs are avoidable by having much better, comprehensive intervention systems and workplace policies that are much friendlier to families with children with disabilities.”

These estimates, published in JAMA Pediatrics, are higher than previous ones, and highlight how diverse the costs of autism can be, from the more obvious medical fees to the hidden economic, social and even less tangible psychological ones.

(MORE: Behavior Therapy Normalizes Brains of Autistic Children)

By comparison, here is how the lifetime cost of autism compares with costs for other conditions (note that figures come from different studies published with data from different years and have been adjusted for inflation. They are for general comparison only).

Lifetime cost
Raising child to age 18 years $241,080
Raising child with ADHD + $1,291,000
Raising child with Down syndrome
+ $533,000
Raising child with asthma + $26,000
Raising obese child
+ $19,000 (medical only)

Sources: USDA, Journal of Pediatric Psychology, EPA, Partnership for America’s Success, Pediatrics

TIME Opinion

Got Credibility? Then You’re Not PETA

Cereal untruths
Cereal untruths Courtesy of PETA

An anti-milk campaign plays the autism card, putting the animal rights group in some very disgraceful company

Correction appended, May 30

There are lots of ways to quit being taken seriously in America. You can deny climate change; you can pretend the Earth is only 6,000 years old. But there’s nothing that quite seals the nincompoop deal like linking something—anything really—to autism. Don’t like sugar, gluten, junk food, meat? Tell people they cause autism. It’s the go-to, check-the-box, one-stop-shopping for know-nothingism.

People for the Ethical Treatment of Animals (PETA), which yields to no group in its ability to be outrageous, has mostly avoided that inevitable step. But in an earlier ad campaign that’s gaining new attention—and that remains on the group’s website—the folks who love animals but apparently have a cooler relationship with facts have come through big. The ad shows a bowl of cereal making a frowny face, accompanied by the slogan “Got autism?” The tag line elaborates on that provocative question: “Studies have shown a link between cow’s milk and autism.”

So where to begin—aside from the fact that no, studies haven’t shown that? OK, to be perfectly fair, when pressed, PETA does cite two scientific papers that seem to support its claim. One, published in 2002, observed some possible improvement in autism symptoms when children were put on a diet free of gluten, gliadin and casein, proteins found either in grains or milk. Not only is the study old, it’s vague—with the researchers broadly blaming the problem on “processes with opioid effect,” whatever that means. It was also tiny—relying on a sample group of just 20 kids. Finally, the study was admittedly single-blind, which means that the experimenters knew which kids were getting the special diet and which weren’t. Got bias?

The second study came even earlier—in 1995, which is the dark ages of autism research—and it was almost as small, involving just 36 subjects. It detected no real link between dairy products and autism, instead finding only antibodies to milk proteins in the blood of autistic children. That suggests, well, who knows what? Association, as people who understand basic science will tell you, is not causation, and blood chemistry is only a broad, imprecise starting point for proving a link between any suspected cause and observed effect in research of this kind. Nineteen years after the paper was published, its authors have not moved one step closer to drawing that line between milk and autism—and neither have the thousands of other studies that have come since.

PETA has been getting justifiably blowtorched for the ad since it was resurfaced by various media outlets in the last day. But even in light of the criticism and the science that shows no such effects of milk, the group stands by its insupportable claim, saying, in a statement, “PETA’s website provides parents with the potentially valuable information that researchers have backed up many families’ findings that a dairy-free diet can help kids with autism.”

Look PETA, activism is easy; scaring people is easy; making parents feel guilty because they fed their autistic child a bowl of Cheerios and milk is easy. Science is hard—which is why not everyone gets to do it.

Oh, and while we’re on that, you know what else is hard? Autism. It’s hard for the children who have it; it’s hard for the families wrestling with it; it’s hard for the researchers knocking themselves out every day to understand it and treat it and prevent it. They don’t need agitators and fabricators making things worse. There’s nothing wrong with protecting the animals, but try to do it without hurting the kids.

Correction: The original version of this article misstated when the PETA campaign on milk and autism began.

TIME Education

My Fight With California to Treat My Autistic Son

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Young boy with autism selecting the right combination of beads to string together. Large beads allow the boy to better manipulate the objects to develop fine motor skills. Linda Epstein—Getty Images

When Ana Beatriz Cholo's son turned three, state and local agencies tried to pull the plug on her child's special education.

“Freeze!”

The kindergartners stop what they are doing.

“Now, everybody stomp your feet!” The children oblige and watch carefully for their teacher’s next command.

“Everybody freeze again!”

“Good,” she compliments them. Her band of mimics, which includes my 6-year-old son Jude, is doing a nice job of following her movements and looking at her face.

When Jude seamlessly makes the transition from one activity to the next, he is rewarded with a “Great job!” and one minute of individual play with an action figure of his choice. When his minute is up and his teacher requests that he re-join his peers, he asks politely, “Can I have another minute, please?”

“Yes, Jude,” his teacher responds. “Nice asking!”

Jude is one of 10 kids with autism spectrum disorders in this special education class in a public school in Seal Beach, Orange County, that I got to visit one recent morning. It’s one of the components of a program I’ve put together so Jude can learn effectively and interact better with other kids. As a parent of a kid with autism, let me tell you, I’ve had to learn a lot, too.

In 2006, I moved back home to California from the Midwest, where I had been working as a reporter for the Chicago Tribune. Even though I was now working for the Associated Press in downtown Los Angeles, I wanted to live in Seal Beach because it was close to where my parents lived and because the Los Alamitos Unified School District (which oversees public schools in Seal Beach) had, among other attributes, high test scores. My daughter had been accepted into the Orange County High School of the Arts and I was looking for a good junior high school for my second oldest child.

I had no idea what the special education programs were like, and I didn’t care. But after we’d been here nearly five years, my youngest son, Jude, was diagnosed with an autism spectrum disorder when he was 2 ½.

At first glance, you would probably not detect anything “different” about Jude. Kids along the autism spectrum commonly have difficulties with communication, behavior, and social interaction, but there’s a wide variation in how this neurodevelopmental condition affects each one. My adorable boy with olive-green eyes and a disarming smile is very verbal and loves socializing with other kids his age. If you engage him in conversation, he may charm you and lure you into a conversation about his favorite video game, “Angry Birds ‘Go.’” He may even impress you by saying something profoundly insightful for his age.

Jude’s challenges are focused mainly on his communication, behavior, and what his teachers and therapists call “non-compliance” issues. When Jude loses his temper he bites, kicks, punches, pinches, scratches, or throws things. He’s not fully potty-trained, and persuading him to go to the bathroom often results in arguments, tears, tantrums, and, yes, messy accidents. He cannot, like children who develop typically, learn language, play, and social skills by observation. He has to be taught.

When I heard Jude’s diagnosis, I was scared, confused, and worried about his future. Would he still be able to attend college, get a job, and get married? Would he ever be able to live independently?

The county initially funded therapy for Jude through the Orange County Regional Center and asked us to pick from several providers they were contracted with. Back then, there was no Yelp for special education services. Because we were clueless at the time, Jude’s father and I were more likely to pick the provider with the most professional-looking website.

After doing some research and talking to experts in the field, we realized we wanted services that followed the principles of Applied Behavioral Analysis (ABA), which, generally speaking, is used to increase functional skills and reduce challenging and interfering behaviors. ABA has undergone rigorous research at UCLA and is supported by 40 years of scientific research, which means a lot to Jude’s father and me.

Some parents like to experiment with different techniques and methods, but there is also a lot of anecdotal “evidence” out there. I never paid attention to actress Jenny McCarthy until I realized she was peddling misinformation on the alleged dangers of vaccinations. Minerals, gluten- and casein-free diets, and chelation therapy are also sold as remedies that will “cure” autism but these so-called treatments seem to me to be just pseudo-science.

A few months into his first treatment, we faced another hurdle. At 3, children need to meet certain criteria to continue receiving services from the county. For whatever reason, we were told that our son did not meet the criteria. We were incredulous; we suspected state and local agencies were under pressure to cut their budgets. Autism advocates told us that if parents don’t fight to get services, they often won’t get them.

At the time, Jude’s vocabulary was less than 25 words, his temper tantrums were fierce, and he was being threatened with getting kicked out of his regular daycare. We took out a loan and hired a clinical psychologist to conduct a thorough assessment, which proved he fit the criteria for continued services. The price tag was $3,500, but her 25-page report was worth it. Jude would continue to get state-funded therapy, and he would also begin attending a public preschool class for 3-year-olds with autism.

But school is just one of the three kinds of support that are recommended for Jude: a therapy team from the Culver City-based Lovaas Institute visits him at a regular district-run afterschool daycare and also at home. The 10 hours a week of additional therapy is funded by Jude’s father’s medical insurance. This kind of therapy is no longer covered by the county or the state, as it was just two years ago.

These additional services are important because he needs the reinforcement: recently his case supervisor at Lovaas said his therapists would begin pulling Jude out of his regular play at daycare for one-on-one sessions to practice socialization skills. The therapists will teach Jude to say, “What are you guys doing? Can I play with you?” when he wants to join the action. The therapists will also hone in on behaviors he should not engage in, for example, getting too close to his peers’ faces or touching them. I just wish these therapists – mostly young adults – didn’t all move on so quickly. Some of them worked with him for just a few months, leaving Jude feeling abandoned on an ever-changing Conga line.

It hasn’t been easy to juggle all this additional care and pay the up-front costs for it. We started twice-a-week speech therapy for Jude in 2012 at Cal State Long Beach. But I had to take off work early and pay $500 per semester. I was staying up until midnight or 2 a.m. to catch up on work and this took a toll on our family’s emotional health. We just couldn’t keep doing it. On top of everything else, Jude has also had to deal with the 2012 death of my mother, who had been spending time with him almost daily, and my split-up with his father.

All told, my son seems to be improving, but it’s uneven. Before, he would get frustrated simply getting ready for school in the morning. He would resist going to the bathroom, getting dressed, and walking out the door. Now, he’s at least open to the idea of going potty first thing in the morning and then getting dressed. And I know now to “prime” him for the transition from an activity he likes to one he doesn’t – for instance, telling him while he’s playing in the evening, “In 10 minutes, we’re going to have dinner. What are we going to do in 10 minutes?”

For the future, I want Jude to be able to make friends and hang out with his pals and talk about the stuff they are interested in. I’d love for him to attend college and experience living in a dorm, dating, studying, and dreaming of his future. But I try not to get ahead of myself: I know he needs to find his own way, his own tribe, and embrace the uniqueness that is his own. Do I want him to be “normal”? No, I don’t wish that upon anyone. How boring! And besides, what is normal?

Ana Beatriz Cholo is a freelance writer and photographer based in Los Angeles. This piece originally appeared at Zocalo Public Square.

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